Going into surgery, I really had no idea what to expect. No matter how many questions I asked of my surgeon, I could never quite pin him down to how much recovery time I would need after surgery. I understand all people heal differently, but I’m a planner and I have kids that I needed to schedule help for. So I am going to share my Thyroid Cancer Surgery Recovery story in hopes that I can help other’s like me, who want an idea of what to maybe expect. Just note, this may not be what your story looks like.

One of the very first shocking things to discover about my Thyroid Cancer surgery (way easier to say than Radical Modified Neck Dissection – a.k.a. removal of my whole thyroid and many of my lymph nodes in my neck) was the amount of wait time to get into surgery. I was diagnosed in March 2015, but not scheduled to have surgery until mid-May. I am pretty sure one of the hardest parts of surgery was the waiting period. “Hi, you have cancer. We are very sorry. But we will not be removing it for two months.” That was hard to swallow for me. Not to mention the draining fatigue that came with the waiting and cancer. It was worse than early-pregnancy-tired!

But the waiting time helped me PLAN!

I am incredibly lucky to have had a large rally of people support me and help me function through the whole process. From people willing to step in and watch my kids when I was too tired to play or recovering from surgery, to people setting up “Bring a Meal” sign up forms for me and those that “babysat” me after surgery, there are too many people to thank.

I was in the hospital for roughly 3 days after surgery. This may be longer than others, as I was having a really hard time not throwing up all the pain meds they were giving me (umm.. throwing up after major neck surgery.. not fun!). After going home I scheduled to have my children go to grandma’s for about a week. I’m a single mama, with small children, young enough they don’t know that hugging and kissing mommy’s boo-boo would be painful, not helpful, so to grandma’s they happily went! Knowing that I was going to have multiple medications to juggle and a rough time getting up and out of bed, I planned to have babysitters to watch me for about a week.

Literally less than 15 minutes post-surgery, updating my Facebook to tell everyone that I was “just fine” and not to worry.

Friend’s volunteered to stay overnight and manage my meds, warm up meals for me, force me to eat, get me ice, and help me entertain my stream of visitors for about a week to ten days after surgery. The “Bring a Meal” sign up page was a life-saver in the sense that now the ‘babysitting’ friend didn’t also have to worry about grocery shopping and cooking.

I highly recommend using a site like: https://www.takethemameal.com/ to set this up.

Another huge recommendation I have for post-surgery: use a white-board marker to write on a bathroom mirror, or write out on paper all of your medications and when/dose to take. I found that when I was really tired, or woozy from meds, or my ‘babysitters’ were switching out, meds got really confusing. “When was the last time I took my calcium??”

You will see that I wrote out times, amounts, and abbreviations for all my medications.

Speaking of calcium, if you ever notice post-surgery that your lips tingle or your hands feel numb (I described it as my hands feel like I have mickey mouse gloves on or they are swollen, but they aren’t) your calcium levels have dropped and you need to tell a nurse immediately. Easy fix: chewing up a lot of tums a few times a day until your para-thyroid kicks back on, but it is important to tell people about the symptoms (I just thought I was too high from the morphine!).

Now, let’s talk about how you are going to feel after surgery

I was pretty frustrated that I was never told what to expect after surgery. I don’t do well with the unknown. The downside to a Modified Radical Neck Dissection, versus just Thyroid Removal is they peel the skin back to reach in there (ick, I know!). Unfortunately, with this kind of surgery, there is a chance of nerve damage. I was one of those lucky ones who got this (insert sarcastic voice). No one warned me of the numbness or burning sensation that was about to come. About 4 days after surgery, my nerve damage began to show symptoms; basically think of what it would feel like if someone took a hot curling iorn and rolled it down your neck from your chin/jaw line all the way to your collar bone. Not pleasant.

Three Days Post-Surgery. They send you home with a disgusting ‘drain tube’ that they will later rip out at a post-surgery check up – be forewarned!

The painkillers they send you home with don’t make it go away, just make you care a little less about it. Ice and staying in the laying down position was the only thing that made the burning/tingling tolerable. The longer I was standing or sitting upright, the worse it burned. So I basically entertained visitors and spent all of my time laying in bed for about 10 days. My friend made me a “get well” basket and included this cute little icepack that basically saved my butt. As people came to visit, my request was always to bring a bag of ice because we were going through it so fast. I’ve been told the tingling is the nerves regenerating and so my feeling should hopefully return on it’s own. About six months later, the tingling was gone, but the numbness still bothered me until I found this product, BRIOTECH which I used twice a day for several months and it seems to have restored almost all of my feeling, not to mention also greatly reduced my scar!

Another thing they don’t tell you; if you have long hair like I do, expect that they use a glue-like substance to slick it back during surgery. I understand they need to keep the surgery site sanitary, but really, glue in my hair?! Not to mention, hey, no showers for a few weeks from basically waist up. So try to figure that one out. Here I am, entertaining visitors in my bedroom, laying in bed, with my neck cut open and glue in my hair. When one of my close friends, who happens to also be my hairstylist, called to see how I was doing, I may have cried a little over feeling very ‘non-human’ and gross because of my hair. She was such a saint! She engineered a way to wash my hair for me without getting my neck wet (as ridiculous as it looks!) and brushed/styled it and everything. That was the first time I felt normal in over a week! Made such a difference. Honestly, it took about two weeks to get the glue fully out of my long hair.

My friend and hairstylist engineered a way to wash the glue out of my hair without getting my neck wet using a tarp, watering can, and a large tub (black thing under the tarp).

Overall, I have no idea how I could have survived the post-surgery portion of Thyroid Cancer without the help of my friends, family and people at my church. They all rallied around me to support me and take care of every little thing. Your story will probably be different, maybe you won’t have as long of a recovery as I did. Hopefully you won’t deal with the nerve damage or the glue in your hair. No matter how your story is different than mine, I hope that sharing mine will help you prepare for the journey you’re about to go on. It does get better and it is all worth getting the cancer removed. This is the hardest part in my opinion of all the treatment you’ll deal with.

Have you had this surgery? What things would you recommend to others before having it? Leave your thoughts and recommendations in the comments below.

10 Days Post-Surgery. I was finally to a point where I could handle people’s visits sitting up and my kids were home to cuddle their mom!

So sorry to hear your symptoms are getting worse. The biopsies were the scariest for me! Not a fun experience at all. I’ve even told my doctor that if they suspect something is back in my neck again I’d rather go straight back to surgery than be put through another biopsy. Or at least knock me out for the biopsy!
Know that there is normalcy and health again on the other side of this. I’m thrilled to hear that my sharing has helped. I’m going to work on getting my other posts up on the LID diet and Radioactive Iodine Treatment, as well as now two-years post surgery update. Best of luck to you and my thoughts are with you for a speedy recovery!

Thank you so much for sharing your story. I am scheduled for a total thyroidectomy and modified neck dissection this Friday (4-7-2017)
Your story has really helped me and elviated most of my anxiety of what to expect! Thank you so much. I am so proud of you and hope to be as brave and strong as you!
#unbustable
#strength

Thinking of you today and hoping that surgery went well! Here’s to a speedy recovery and no complications! I am thrilled anytime I hear that my story has helped others be less nervous about their own journey.

I too just had full thyroid and surrounding lymph nodes removed, however it was done as outpatient and no drain was used. Dermabond glue sealed the incision and I’m able to shower thankfully. I woke up vomiting after surgery as well, DEFINITELY no fun and painful, but after the rough 2nd day of pain in the throat area, I’ve done okay. I am different in that I want to be left alone and no visitors when I’m in pain and recovering, but the meals would have been nice! I go for my follow up next week, hoping to skip radiation! Best wishes, take care!

Thanks for posting this information. I was diagnosed with papillary thyroid cancer 3/1/17. I also had to have all my lymph nodes removed from the left and center of my neck. Surgery was last week and so far recovery is going well. Reading everything you went through helped me prepare for my surgery and know what to expect. Thanks again for sharing!

I was diagnosed May 17, 2017, after my biopsy was done May 15. The Radiologist is a friend and neighbor and had handled my initial ultrasound last October when I “felt something odd” in my throat and had the original ultrasound as suggested by my doc. Two small nodules were normal for my age (58), so he recommended 6 month follow-up. Six months later the changes in one of those nodules and growth of more led to the needle biopsy. My annual physical was coincidentally scheduled May 18, and my recently acquired ENT (for an unrelated issue in January) happened to be walking by when my doc’s office sent over the referral. He had his staff fit me into his schedule the next morning. I am scheduled for surgery next Friday. He doesn’t expect lymph involvement because of small size of lesion (1mm) and absence of additional symptoms. Endocrinologist I am to see is actually the lead guy in my husband’s diabetes care team. I’ve had a lot of fortunate events and caring people pulling together so far to make things work quickly. Or my stars are all aligned, or something… Your story scares the crap out of me, sobers me, prepares me. It’s cancer. It’s surgery. It sucks. My husband will be at my beck and call, which is good because I don’t like other people around when I’m sick. Thank you for sharing. I appreciate your candor! I’m glad I have chin-length hair!!

I am in my 10th year of remission from thyroid cancer. When I was diagnosed in 2007, I was told it isn’t hereditary by one doctor and it is from another! My mom had thyroid cancer when I was young. Thankfully, she is doing fine. My surgery was outpatient! I was allergic to the pain meds (Percocet), so I had to switch to Tylenol only. I had pain, but I thought it was from the intubation tube used during surgery… I later found no out the pain was NOT from the tube… For the past 10 years, I have gone through tests to ch ck for reoccurrence, and thankfully the have been negative! The first few years I had to have a full body scan, ultrasound and blood work after getting 2 shots so I don’t have to stop my meds. This year will be my last year for the shots, pending everything comes back normal. I KNOW my insurance company will be glad for that!! I wish everyone the best of luck in their recovery!!

Thanks for sharing your story. Hi, my name is Nancy I’m 60 soon to be 61 years old. I go this Tuesday for my biopsy results. I’ve had 2 cervical neck surgeries since Dec 28, 2017 at which before my second neck surgery March 1, 2017 on CTSAN they saw left Corotid is blocked 80% and they saw nodules all over Thyroid. So now I’m facing surgery on Corotid (strokes run in the women in my family) and now the possibility of Cancer of my Thyroid….I will admit I’m a little scared. But also like to know how long does it take to return to some what a normal life or do you? Were you able to return to work ? Or are you on disability? I am having pain issues still from neck surgeries and then all of this. Your reply would be great. Again thanks for sharing and God Bless you..hugs Nancy

Thank you for sharing your story! I also have 3 young children and am not getting the property info from doctors and nurses to prepare for any of the recovery time. I go in 2 days for my total thyroidectomy and radical neck dissection. Even if our experiences differ, I will forever be grateful for your story.

Thank you for this article. My husband was diagnosed 2 weeks ago with thyroid cancer. His doctor found a cyst on his neck. We were told it was the size of a golf ball. It was pushing on his jugular and his coradid (sorry for the misspelling!) artery. They biopsied everything they could think of and removed the cyst. The cyst turned out to be the size of a baseball. They also removed his tonsils…not a pleasant thing at 44!!
The biopsy showed he had thyroid cancer. They will be removing his thyroid and all of the lymph nodes in his neck in 3 weeks. This article was so helpful for what to expect. Thank you so much!! He has done everything through the VA hospital. While they have not sugar coated anything, they also haven’t told us what to expect.

Thank you for sharing… my 15 year old daughter was just diagnosed and we are seeing the surgeon on Thursday. I appreciate your story. I’m a teacher and I like to plan or at least have a game plan. I am going to keep the things you shared in mind.

Hi I’ve my thyroid removed two months ago and have been on the low iodine diet for two and a half weeks. I am waiting for the body scan to be approved and scheduled (Pre authorized). I am surprised at how long it takes to get through the process.

Like other writers not much has been said about RAI. I’m nervous and appreciate you sharing your story and experiences.

Boxer braids were a life saver for me 4 lots of surgery right side thyroid, left side, right neck dissection and left. I found. Being as active as possible helped my recovery massively. When I wanted to wallow my husband and kids picked me up. I loved your story so much and hope your are really well 😘

Boxer braids is such a smart idea!!! Why didn’t I think of that!? When I was a kid and went to do mission trips in places without showers for a week, we would all cornrow our hair. That would be an efficient way to save your hair from all the surgery goop and lack of ability to brush/wash it after.
Thank you for sharing your idea with everyone else on here 🙂

Hi Stella,
Honestly, thinking back the surgery site pain itself wasn’t that bad for me. But I had a lot of other things going on that seemed to distract from it. For example, right after surgery while I was still in the hospital they gave me morphine which made me so sick to my stomach for the first two days that they couldn’t get me to stop throwing up, no matter what anti-nausea medicine they gave me. Throwing up with a large neck wound is not something I advise! Once we figured out that it was the overly-strong pain meds upsetting my stomach, they reduced those and I still didn’t feel the pain but was much less sick.
Then once I was home, the nerve tingling/burning sensation was the only part that I could think about. So I didn’t even notice if the actual neck surgery was painful.
I wish you the best luck in surgery next month!
Thanks for stopping by to read my story,
Angie